Calling all TNs
Comments
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Cat, so happy to hear that you were able to get into a clinical trial and are getting things underway so quickly! I noticed you have the chemo and rads listed - what trial will you be in and what will it be studying?
Glad to hear you are home and hopefully resting right now.
Many hugs to you!
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alright CatW! We are all with you, you can do this!
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SportsMomma, I understand your concerns about recurrence. I too have my days but I tell myself that I am doing the best I can for me to stay healthy. Then I get out of my head & get busy doing something I want to do. Some days I do stuff I hate to do but know it needs doing & give myself pats that it is done. Right now I am in the middle of redoing a spare bedroom (empty nest syndrome) it is going to be a day room. A day bed with pop up trundle, my yoga mat on floor, sewing section in the corner - all stuff I like to do. I am fortunate my children live close by. My Grandson is my big joy. I am spoiling him, then letting his parents do the dirty work.
My philosophy is when it hurts for over two weeks then see doctors - otherwise it could just be a strain or something I ate!! We all have our ups & downs but we just need to remember we are always fighting. Maybe not as vigorously as in the chemo, surgery & rads days but by our choices of food, exercise & attitude. I come on here & read frequently but don't always post. I know all you ladies & one husband can relate to each other's up & downs & that helps me keep my head clear.
That's my take on it. I just keep on...
LookingForward...
Marsha
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Hi everyone! Just to check in. I saw some of you are talking about frying pans. Check out the German brand "Woll". It is not Teflon, and works like a breeze!
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hey everybody..
was out of discussions since quite sometime. My radiations are going on and its consuming a lot of my time and energy.
Just quickly went through all the posts.
Cat dear...so happy to hear from you!! which chemo drug have you begun with. It seems its called something called "Rescue chemo"
everybody else..lots of hugs.
Inspired..I liked the idea of all of us exchanging all micro details about our pathology report. If i remember correctly it was tumor size, margin status. LVI, nodes. There is also something called perineural invasion on which my radiation therapist put some stress..it was negative. And all Tnbcs are not pure ones, they have er pr cells mixed in some amount too. Then there are subtypes of tnbcs etc.
simple: my radiations will be over april last week. 33 for me.
Reg Radiations they put 4 tattoos like a cross and 1 more tattoo close to the nipple. They focus more on the breast and lump area but some amount of radiations do touch lungs and all. I hope its not inviting one cancer in the process of getting rid of another, that too prophylactically.
hope to be regular from now on..
love to all!!
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Hello ladies and 1 husband:
What do you all know about Kefir? Is anyone drinking it?
This blog has 78 benefits of Kefir: "Kefir vs Yogurt" - Article at Simply Healthy Family Website
More info: "Kefir is Recommended for Breast Cancer" - Article at Food for Breast Cancer Website
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Inspired, Kris Carr's blog today just happened to be about kefir.
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Thank you Simple! I just read the blog you posted. I found an organic brand called Lifeway Kefir, and it's on sale at Sprouts this week. There are no added sugars, but I didn't realize all the research surrounding casein! I might have to find a brand that isn't from cow's milk, I have read there are different types. "Casein and Cancer" Article in Naked Food Magazine
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Hey...just had some spinach and kale chips today....yum....I think I had at least 6 of them...gotta give a girl credit for trying....right?
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Lisadi-the freckles are probably just normal changes, but I would get it checked out, as any change should be reported to your doc.
titan-I haven't tried kale chips, but they actually sound kinda good!
Thank you for all the good stories of later stages! I seemed to have put all my reports away and out of my mind also because it was all to scary. I have a recording from my meeting with a second opinion doc. I haven't ever listened to it. I might at some point, but why bring back that fear? The doc I chose did not like to scare me so I had to pull info out of him and I would have the nurse print out all my reports. Only once did a doc give me statistics, and that was my breast surgeon after I had a complete response. I think they were all pretty amazed that I had such good results with treatment. All though my mo was always very positive.
Cat-I am glad you are ready for treatment and ready to kick some cancer a$$. The lung biopsy sounds terrible, so glad you got through it and the port placement without too much trouble. Hoping that the chemo will be gentle on you.
Fierce-Cute name for a runner duck! I am just loving my 3 runners! I will be sad when I put them outside permanently. I am getting used to their soft peeping, although I swear I hear some soft quacking going on.
Hope everyone is having a good week!
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Hooray cat!!! Now go kick ass!
I drink Kefir occasionally. It's like a smoothie with a sour taste. I've been off dairy so would need to go find an alternative and haven't done so.
I love the Kris Carr books and her attitude but not that interested in following her lifestyle. But I wish her luck.
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I'm really freaked out right now. I was signing in to the boards, and was ready to put in user name. As I tapped on the space to begin to write my moniker, other names popped up.... Inmate, LuvRving, and OBX. An omen, or positive vibes coming from the other side? REALLY FREAKED OUT!!!
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To those who mentioned freckles, that was one of the first things I noticed after my first chemo. All my freckles on my face that usually come out with the sun had popped up. I asked my chemo nurse about it and she said sometimes any cells on your skin that are sun damaged, or pre cancerous, can turn brown and fall off. So quite possibly, it was detecting those cell changes. Another reason for me to go have one of those fancy lasers and get rid of some wrinkles.
Cat - good luck with your treatment! Stay strong!
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Allydp, taxol got rid of tons of my sunspots. It also made a growth pop up on my back that looked like a wart. I made an appointment with the dermatologist specifically to have her look at that spot, but then I had AC and the AC made the "wart" dry up and fall off! I'm sure all those spots that chemo worked on were damaged areas of my skin so it was nice to get rid of them. A little silver lining to chemo!
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slow...let's go with the positive vibes...those ladies will never be forgotten....obviously....lol
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Haven't checked in for a long time. I finished AC DD 4 TX and TAXOL 12 TX. Had MRI March 7 that showed no evidence on cancer in either breast and no lymphadenopathy. Hoping it stays that way until my BMX and HYST on April 15. I am BRCA 1, hence the HYST. Anyone else have both surgeries atsame time? Kinda freaked out about it...also having alot of muscle pain in legS. Some swelling in right ankle
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Slowloris: I 2nd what Titan said. Positive vibes. -
Hello all. I am 31 and like so many of you I felt my lump almost 3 weeks ago. It seemed to come out of nowhere. I went to a walk in clinic the next morning and she set up an appointment. blah blah blah I am almost ready to start chemo. The doc called me yesterday and told me the pathology reports said TN. I must admit. I am terrified. He said there is a new drug on the market that he will mix with my chemo. Once a week for 2 or 3 months. I can't remember because all I really heard was TN. Then every other week for 4 rounds. He told me "You're young and you can handle this" I have a 2 and 6 year old. I better handle this. Please, any words of comfort? I seemed to have a 6th sense about what it was.
https://www.youtube.com/watch?v=F-d0JKQnnA0&list=UUCXx_Da9hqXhluT0InSmU0w -
Coopdizzle - Sorry that you are on this journey. Have your 'pity party' everyone needs one in the beginning. You are safe here. We will listen and not judge you. If you need to yell, cry or just vent...we have all been through it. Then its time to go into 'fight mode'. There is so much hope and lots of long term survivors on here.
Might I suggest taking someone with you to your next few appointments. You wont remember everything and an extra set of ears is wonderful.
I had lots of people offer to help (you will need help with 2 little ones) designated 1 very organized person as your contact person. I had a hard time asking for help since I was generally the one helping others. I learned a very valuable lesson through all of this and that is that you rob others the joy of helping if you don't ask when you need it.
The gals on here are a wealth of information. Use them. There are here 24/7. You can do this! (( soft hugs))
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lovie lovie - you are so right about getting help from others - this is a journey not to be done alone! I read somewhere that "allowing others to help us is like giving them a gift" - this gave me great encouragement.
Coopdizzle - you will be just fine going through chemo - it is not easy, but it is do-able. Let us know wht chemo drugs you will be taking - I am curious to know what the "new drug" is. Take great care of yourself.
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Peggy, thanks for sharing your experience. i live in Centreville so we are not that far from each other.:-) I had two more smallish tumors too in the same breast but the doctor said i did not need to do needle biopsy of them since i am going to have the MX. I was wondering what you mean by saying that one of them became hormone dependent after surgery? did the pathology report at the surgery time say that? and it was diagnosed as tnbc before that? I am having neoadjuvant chemo too. just finished AC and on second taxol and carboplatin treatment, just had an ultrasound done today, and found the tumor shrank to 0.7cm from 2.4cm. Sounds like you had a complete response. I am going to opt for bilateral MX too and you are right about having the peace of mind with that. Would you mind sharing your experience with the reconstruction surgery? i am very torn about having that done.....
hugs and take care,
Liyan
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Simplelife - how interesting about the freckles and spots! Definitely a nice little bonus.
Tumornamedclyde - I'm interested in those who have had a hysterectomy/oophorectomy and BMX at the same time as well. I'm BRCA2+ and would love to do both at the same time in August. My OBGYN and onc said it would be fine, but I haven't asked my breast surgeon yet. So far it seems like it's more of scheduling issue than anything else - getting all the surgeons in one place.
Coopdizzle - I'm 2 months in to my TNBC diagnosis and I remember all too well how terrifying that first month was. I still have days where I dwell on it. It's a lot to take in, but as others have said, allow yourself time to feel sad, mad, scared, etc., then put your fighting gloves on and get to work! This is a wonderful group of women and a great place for support. Hang in there. I wish you all the very best.
I had quite the scare with a scan this week. Due to being BRCA2+, my onc started ovarian screenings. They found a 2.6 cm mass on my right ovary. Turns out it's a blood filled cyst that is most likely benign…but sheesh. I could've done without that excitement! If it's still there next month, they might remove it, which is fine by me.
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Coop - welcome! You've landed in a great place for TNBC. You will find some amazing people here in all stages of the cancer battle. We share the good and the bad, our ups and our downs...I hope you'll find strength, compassion and knowledge here!
Ally, I watched your slide show and smiled, cried,laughed and just shook my head in bewilderment that such a beautiful young woman would be diagnosed with this crappy disease. The photographer was fantastic and captured every poignant moment. Thanks so much for sharing such a personal moment with us.
Cocker - anything from kathrynn?
Everyone - hugs, love & positive vibes coming your way!
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Coop,welcome to the boards. You're in great company here. The ladies (and husband) are wonderful, lots of support and info.
Navymom and Titan, Thanks for the encouraging thoughts. I can't explain what happened, and when I logged in again after that, everything was back to normal.
I'm scheduled for a brain MRI and Pet on Monday. I need some prayers and positive vibes sent my way. I'm hoping for some shrinkage of the nodules, or atleast no progression. I think there may be some progression because I feel 2 more small nodules on my other breast . That would be a total of 10 of these skin and chest bumps. weird, huh? I'll see my MO on Friday hopefully with some answers, maybe some news on a clinical trial.
have a great weekend everyone. Stay safe!
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Thinking of those going through an unimaginable disaster. We are having a moment of silence at 10:37 am Saturday for the victims, survivors and community of Oso.
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Tumornamedclyde-I like your name
I had my bmx and hyst. separately so I can't help. I do know the hysterectomy was tough on me. Not the pain or healing, but the fatigue and hot flashes. Honestly, I can't imagine doing both at the same time, but I was pretty wiped out by the time I had my surgeries, almost a year apart. I am also brca 1. -
Slow-Did I miss something? I am sending prayers and positive vibes your way:) Sorry I somehow missed what you are going though, probably my chemo brain! I will be thinking of you. Try and have a stress free weekend. Do something that you enjoy.
Where did their names pop up when you typed? In the field that you were typing in? I agree with titan and navy, they are sending positive vibes! Man, I miss those women!
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coopdizzle-you can handle this. It is tough at first, the mental part of it. Once you start chemo you know you are doing something to fight so the mental part gets a bit easier. If you have any terrible side effects let your doc know immediately and they can change your nausea meds or other meds to help you . This is not a time to act tough and not ask for help. Your children will be a big blessing, as they always are, but will help keep you spirits up. I don't have children but have lots of animals and they kept me going. Chemo is tough, but it is not as bad as many imagine before starting. Some women sail right through it, some have a bit of a rougher time, but manage to get through it. Stop by here often, even just to vent, or to ask questions, or to say anything that is on your mind. Sorry you have to be here, but you will meet many amazing women, (and a few men), all willing to support you!
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Good Saturday morning!
Slowloris, I'll be thinking of you this weekend and on Monday. I'm keeping my fingers (and toes) crossed for shrinkage in spite of another bump coming up on your skin. I hate this disease!
Allydp, I'm so glad the mass on your ovary is a blood-filled cyst. Excitment like that is not what you need right now.
Lettingo, congrats on finishing the AC and being onto the taxol/carbo part of your treatment. I hope things are going okay for you. Chemo feels like it's going to last forever when you are in the middle of it, and the all of the sudden it's time for your last infusion. Hugs.
Coop, I just watched your videos (and subscribed to them). The emotions you shared are exactly what I went through too when I was first diagnosed. I think most of us suffer some form of PTSD when we get diagnosed. It a very emotional time period. I think I was in panic mode for about a month. Getting my first infusion actually made me feel so much better because then I felt like I was actually doing something positive to make the cancer go away. When does your chemo start? BTW, I also went to a walk-in clinic and demanded a mammo and got one the next day. I had just moved to a new town and didn't have a doctor. Anyway, you have found a good place here. Have you joined the chemo thread here for your month's start date? I didn't join mine until I was about half way through chemo, but I have found that thread to be a wonderful place for support. Almost all of us are done with chemo now, but those of us that had neoadjuvant therapy have stuck together through surgery and rads. I was also clinically node positive like you at the time of my diagnosis and my docs said I needed an ALND because of that. It does suck, but with triple negative we do what we need to do to give ourselves the best chance of survival.
Tumor, congrats on finishing chemo! We will be in your pocket for your April 15th surgery whatever you decided to do. How are you feeling post chemo? I was really hoping I would be stronger by the time of my surgery, but chemo takes a while to bounce back from. I was surprised how much discomfort I was in for a couple weeks after surgery too. I'm about six weeks post surgery now and still feel soreness and tightness. I had a LX, ALND and also had old sub-pec implants removed as well as the capsules that were holding the implants in my muscles so even though I didn't have a bmx my entire chest wall was operated on. I had three drains and the nerve damage seems to be a bigger issue than the actual incisions. Also, after chemo, I think surgery is harder to deal with because we are not in the greatest shape to start out with. Whatever surgery you decide on, just be prepared for a few weeks of moving very sloooowly! Moving around, walking etc. feels bad at first, but it is so important for recovery and reduced complications. Just listen to your body, it will let you know what it can and cannot do in the beginning. You can do this!
I had my planning session last Monday for rads and my verification session this coming Monday. I don't know my actual rads start date yet. I wouldn't mind if they went ahead and gave me my first treatment on Monday. Of all the forms of treatment we get, I seem to have a mental adversion to rads the most. I just keep telling myself that this increases my odds of survival and greatly reduces my chances of a local recurrence. Since I still had a small amount of cancer left in two of my lymph nodes after neoadjuvant therapy, I know I have to do what I have to do. I figure I can do anything for six or seven weeks. Like chemo, it will be over and done with much sooner than I think.
It feels like my hair growth has come to a standstill after an initial flurry of peach fuzz. My eyelashes are completely back and my eyebrows are mostly back so I'm delighted with that. Hubby claims he can see a difference in my hair, but it's going to be a while....I can tell. It's nothing like the speed that normal hair grows. I have to say, I do like the feel of the downy peach fuzz on top. It's hard for me not to keep touching my head when I don't have a cap on...soft as a baby's bottom!
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My leg and ankle swelling goes away when I elevate them and wear support hose....but the achiness in both my thighs and calves is almost relentless. I put myself on 650 mg of aspirin twice day to prevent clots. If its still there at preop testing ill ask for an US for a clot. Dont want to prolong surgery tho. Still hoping to find someone who has done botha hyst and BMX at same time. So nervous ahout two major surgeries at same time. I hate anesthesia so doing them both at same time sounds ideal. ?..
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